Information about Entyvio or Vedolizumab (New Medication)

Happy 4th of July to all the American based or celebrating UC’ers of the world.

There have been some questions over the past few weeks with regards to a relatively new medication call “Entyvio” or sometimes Vedolizumab (and I’m sure there are several other regional/country specific names that this medication has been branded as.

So, in a list of links to some reliable source, I hope this info will help to answer any questions you may have/someday have regarding this new med.

As a general history, the FDA (Food and Drug Administration) who is the local authority on regulations within the US approved Entyvio for treating Ulcerative Colitis on May 20th, 2014. So it has been just over one year since that date.

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Pneumonia 3 times within the 8 months I took Entyvio. Even though I had 2 pneumonia vaccines, and never previously ever had pneumonia or been sick from the flu or even colds much, I got pneumonia within a week after my first dose and two more times within the 8 months of taking Entyvio. When having a colonoscopy 9 months after starting Entyvio, my colon showed no positive effects from the drug so it was discontinued.

My doctor insisted Entyvio did not cause the pneumonia, however the Dept of Health indicates that women over 60 were much more prone to pneumonia from taking Entyvio. It makes sense, since the drug cuts down one’s immune system and we are more suseptble to any infection. The effects of having pneumonia 3 times in such a short time has given me asthma and constant cough as a result.

Only sulphasalazine 8 tablets a day for UC which I’ve been taking for over 30 years and had no adverse effects.

April 1, 2019

Entyvio (Vedolizumab)

22

Joint and bone pain couldn’t walk. This was after 2 doses of Entyvio. Was hospitalized and put on prednisone, had an MRI. They discovered the Entyvio has this side effect in some people.

No meds Ostomy since 2017Best thing got my life back

March 27, 2019

Entyvio (Vedolizumab)

68

Brain fog, constipation, fatigue.

December 18, 2018

Entyvio (Vedolizumab)

59

Arthritis pain muscle pain

yes

November 26, 2018

Entyvio (Vedolizumab)

55

joint pain runny nose

Azathorprine, Apriso

September 7, 2018

Entyvio (Vedolizumab)

67

rash on left side of my waist

June 7, 2018

Entyvio (Vedolizumab)

18

Very tired. Headache

March 7, 2018

Entyvio (Vedolizumab)

65

dry mouth

March 1, 2018

Entyvio (Vedolizumab)

43

sex drive

none

January 18, 2018

Entyvio (Vedolizumab)

34

Tight chest shortness of breath

October 5, 2017

Entyvio (Vedolizumab)

57

No sex drive

September 4, 2017

Entyvio (Vedolizumab)

49

sun burn

July 6, 2017

Entyvio (Vedolizumab)

18

Dry skin

No

June 26, 2017

Entyvio (Vedolizumab)

49

Heart flutters, pressure

ImuranLialda

March 28, 2017

Entyvio (Vedolizumab)

64

Fatigue

February 19, 2017

Entyvio (Vedolizumab)

64

Fatigue

February 19, 2017

Entyvio (Vedolizumab)

43

Joint pain in hands, wrist, ankle and elbow.

Delzicol

January 22, 2017

Entyvio (Vedolizumab)

50

joint pain, swelling, stiffness, weakness (hands, wrists, shoulders, knees, ankles). Pain is worse at night / through the night / first thing in the morning. The pain moves around, day to day.

Started Entyvio November 2014. Had more than usual upper respiratory infections and other infections during first 1.5 years. I was in full remission after one year, and have been doing great ever since. I do best when preparing my own whole food small meals -- fruits, mostly cooked/few raw vegetables, and fish and chicken (red meat is rough on me). It is a miracle drug.

Have had 11 doses over the last 1 1/2 years. Began working well between the 4th and 5th doses. Fatigue, joint and muscle pain, hot flashes and night sweats. Can live with all these side effects because it works very well. Been off Prednisone for a year, that's such a blessing.

Lialda 4 pills a day

July 28, 2016

Entyvio (Vedolizumab)

69

It's effective but creates fatigue. I also become nauseous after eating. I'm not sure if entyvio causes it or if it's because I'm now off the prednisone.

July 28, 2016

Entyvio (Vedolizumab)

54

Tiredness at first, but gotten used to it. No effects now. This stuff is magic.

Bystolic

July 28, 2016

Entyvio (Vedolizumab)

42

Fatigue!!!!!! Joint pain, headaches. Had 3 doses(loading dose) and have not really seen any change. Still having alot of abdominal cramping/pain, still loose, watery stool.

I have just had my 2nd infusion and can already see a very slight improvement. There is a great Facebook group called Entyvio warriors with well over 1000 people sharing experiences on this drug. It really helped me be prepared for the few minor side effects I have had. I highly suggest it if you are considering this med.

We have a 5 year old with UC. We live in the US and our insurance company has denied Entyvio (our last option at this point). Does anyone know if it is available for less money in Europe or Canada or has anyone had success with the compassionate appeal process with the drug companies (we’ve already been denied through the peer to peer process). Any help, advice, etc is greatly appreciated.